Creating Avenues for Parent Partnership (CAPP): An intervention for parents of children with epilepsy and learning problems Janice M. Buelow a, ⁎, Cynthia S. Johnson b , Susan M. Perkins b , Joan K. Austin c , David W. Dunn d a 1111 Middle Drive, NU 413, Indiana University School of Nursing, Indianapolis, IN 46202, USA b Indiana University School of Medicine, Department of Biostatistics, Indianapolis, IN, USA c Indiana University School of Nursing, Indianapolis, IN, USA d Indiana University School of Medicine, Department of Psychiatry, Indianapolis, IN, USA abstract article info Article history: Received 4 October 2012 Revised 11 December 2012 Accepted 12 December 2012 Available online 1 February 2013 Keywords: Pediatric epilepsy Family intervention Behavioral intervention Problem solving Psychosocial care needs Pediatric comorbidity Developmental disability Caregivers of children with both epilepsy and learning problems need assistance to manage their child's com- plex medical and mental health problems. We tested the cognitive behavioral intervention “Creating Avenues for Parent Partnership” (CAPP) which was designed to help caregivers develop knowledge as well as the con- fidence and skills to manage their child's condition. The CAPP intervention consisted of a one-day cognitive behavioral program and three follow-up group sessions. The sample comprised 31 primary caregivers. Care- givers reported that the program was useful (mean = 3.66 on a 4-point scale), acceptable (mean = 4.28 on a 5-point scale), and “pretty easy” (mean = 1.97 on a 4-point scale). Effect sizes were small to medium in paired t tests (comparison of intervention to control) and paired analysis of key variables in the pre- and post-tests. The CAPP program shows promise in helping caregivers build skills to manage their child's condition. © 2013 Elsevier Inc. All rights reserved. 1. Introduction Epilepsy, the most common serious neurological condition in child- hood, is often associated with significant learning problems (SLP) [1]. Moreover, children with both epilepsy and SLP have high rates of be- havioral problems [2–4]. Although caregivers of children with these multiple conditions report high rates of stress [5,6] and need assistance to manage their children's complex problems, typically, they have re- ceived little attention from health care providers and from the research community. Our research team found that caregivers need skills to build effective partnerships with both health care providers and school personnel who are involved in the management of their children's com- plex needs. These skills include identifying goals and creating action plans to meet the goals [7]. From preliminary work, we determined that, although caregivers could talk generally about their concerns, they had difficulty articulat- ing specific problems and setting achievable goals to address these problems [8]. Caregivers with good self-esteem, high levels of mas- tery, active participation in decision-making, and a sense of belonging to the community have been found to be empowered or better able to advocate for their child with a disability [1,9]. Preconditions for empowerment include a strong bond with the child, reasonable quest for information, critical reflection, and ability to take charge (ad- vocating and establishing partnerships). When caregivers have these skills, they tend to have knowledge about their child and their child's condition, competence to care for their child, and confidence in commu- nicating what is best for their child [9]. Although currently no published interventions exist for families of children with both epilepsy and SLP, interventions developed to aid caregivers of children with either epilepsy or intellectual dis- ability have been shown to be effective in lowering caregiver stress [7,10–12]. Interventions that provided information to caregivers of children with epilepsy helped them make better decisions about their children's health care through a better understanding of epilepsy [8,13]. Improving both problem-solving and goal-setting skills also has reduced caregiver stress [14,15]. Other family intervention studies have focused on giving caregivers the confidence to address their children's specific problems [16,17]. Our research team originally developed “creating avenues for parent advocacy” (CAPA) to meet these needs. The intervention for this study was revised from the origi- nal CAPA program and driven by Buelow's work [18], Bandura's theory of self-efficacy [19], intervention literature [7,11,16,17,20–22], and in- terviews with caregivers [8,23]. Creating Avenues for Parent Partner- ship (CAPP) is the first intervention to specifically address the problems of caregivers of children with both epilepsy and significant learning problems. Epilepsy & Behavior 27 (2013) 64–69 ⁎ Corresponding author. Fax: +1 317 278 1856. E-mail address: jbuelow@iupui.edu (J.M. Buelow). 1525-5050/$ – see front matter © 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.yebeh.2012.12.013 Contents lists available at SciVerse ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh